Stefano Christian Londero1, Jes Sloth Mathiesen2, Annelise Krogdahl3, Lars Bastholt4, Jens Overgaard5, Jens Bentsen6, Christoffer Holst Hahn7, Sten Schytte8, Henrik Baymler Pedersen9, Peer Christiansen10, Christian Godballe2. 1. Department of ENT Head & Neck Surgery, Odense University Hospital, Denmark. Electronic address: stefano.londero@ouh.regionsyddanmark.dk. 2. Department of ENT Head & Neck Surgery, Odense University Hospital, Denmark. 3. Department of Pathology, Odense University Hospital, Denmark. 4. Department of Oncology, Odense University Hospital, Denmark. 5. Department of Experimental Clinical Oncology, Aarhus University Hospital, Denmark. 6. Department of Oncology, Herlev Hospital, Denmark. 7. Department of ENT Head & Neck Surgery, Copenhagen University Hospital, Denmark. 8. Department of ENT Head & Neck Surgery, Aarhus University Hospital, Denmark. 9. Department of ENT Head & Neck Surgery, Aalborg University Hospital, Denmark. 10. Department of Surgery, Aarhus University Hospital, Denmark.
Abstract
BACKGROUND: Although a prospective national clinical thyroid cancer database (DATHYRCA) has been active in Denmark since January 1, 1996, no assessment of data quality has been performed. The purpose of the study was to evaluate completeness and data validity in the Danish national clinical thyroid cancer database: DATHYRCA. STUDY DESIGN AND SETTING: National prospective cohort. Denmark; population 5.5 million. Completeness of case ascertainment was estimated by the independent case ascertainment method using three governmental registries as a reference. The reabstracted record method was used to appraise the validity. For validity assessment 100 cases were randomly selected from the DATHYRCA database; medical records were used as a reference. RESULT: The database held 1934 cases of thyroid carcinoma and completeness of case ascertainment was estimated to 90.9%. Completeness of registration was around or above 90% in most instances. Perfect agreement on the diagnosis of thyroid carcinoma was found, both inter- and intra-observer, and κ values of selected variables showed overall good to excellent agreement. CONCLUSION: In a setup with public health insurance, personal identity numbers and extended governmental databases, it is possible to establish national clinical cancer databases with a satisfactory completeness and validity. The DATHYRCA database is considered reliable in terms of describing thyroid carcinoma at a national level.
BACKGROUND: Although a prospective national clinical thyroid cancer database (DATHYRCA) has been active in Denmark since January 1, 1996, no assessment of data quality has been performed. The purpose of the study was to evaluate completeness and data validity in the Danish national clinical thyroid cancer database: DATHYRCA. STUDY DESIGN AND SETTING: National prospective cohort. Denmark; population 5.5 million. Completeness of case ascertainment was estimated by the independent case ascertainment method using three governmental registries as a reference. The reabstracted record method was used to appraise the validity. For validity assessment 100 cases were randomly selected from the DATHYRCA database; medical records were used as a reference. RESULT: The database held 1934 cases of thyroid carcinoma and completeness of case ascertainment was estimated to 90.9%. Completeness of registration was around or above 90% in most instances. Perfect agreement on the diagnosis of thyroid carcinoma was found, both inter- and intra-observer, and κ values of selected variables showed overall good to excellent agreement. CONCLUSION: In a setup with public health insurance, personal identity numbers and extended governmental databases, it is possible to establish national clinical cancer databases with a satisfactory completeness and validity. The DATHYRCA database is considered reliable in terms of describing thyroid carcinoma at a national level.
Authors: Kimberly D van der Willik; Rikje Ruiter; Frank J A van Rooij; Jolande Verkroost-van Heemst; Sander J Hogewoning; Karin C A A Timmermans; Otto Visser; Sanne B Schagen; M Arfan Ikram; Bruno H Ch Stricker Journal: Int J Cancer Date: 2019-11-07 Impact factor: 7.396
Authors: Anna Bebe; Anni Brit Sternhagen Nielsen; Tora Grauers Willadsen; Jens Søndergaard; Volkert Siersma; Dagný Rós Nicolaisdóttir; Jakob Kragstrup; Frans Boch Waldorff Journal: BMC Health Serv Res Date: 2017-08-29 Impact factor: 2.655